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Drug #3 any thoughts on Bosutinib


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#1 momruns

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Posted 05 April 2013 - 08:51 AM

Greetings,

In short was put on Gleevec 2011 at 400, reduced to 300, low ANC, reduced to 200, low ANC, got positive BMB, switched to Sprycel 100mg/QD  , got massive amount of mouth sores (lost 4 pounds on a 14 day cruise).  This drug lasted 3 months with and increasing amount of mouth sores, the pain was intense.

Switched to Bosutinib on March 27th, withing 2 days got massive diarrhea for the following 3 days, it is letting up and I hope it was just a slight bump.  Drinking gatorade.  Get bloodwork on the 15th to see if ANC will handle this drug.

If anyone out there is on Bosutinib please let me know.  I felt very connected to everyone here on Gleevec but I know it is silly but I feel alone on this one.  Is anyone else out there?

Thanks After I wrote this I realized that I have CML not the drug and I am not alone when I just read and write on this site.

Loreta



#2 pamsouth

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Posted 05 April 2013 - 10:17 AM

Still on Gleevec since 2005.  Hope you find some others who can give you positive feedback on Bosutinib.  You are not alone, we all still struggle with having CML whatever drug.  I would like to know what others are experiencing on Bosutinib, short, medium and long term?

Best Wishes, Pam South


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#3 CallMeLucky

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Posted 05 April 2013 - 12:37 PM

There aren't many on bosulif yet, but I think more will get moved in time, I think you will see a few move and by next year maybe have a small population who are on it.  My Dr has mentioned it a few times for me.  I was on Gleevec 400 but stopped after 2+ years due to muscle pain.  I switched to Sprycel and felt a lot better but had some other issues with chest, have since gone down to 50mg Sprycel, feeling better, but muscle pain is there again so not sure.  trying to stya with Sprycel at the low dosage and see if it settles down, it is not terrible so long as it doesn't get much worse, if it does, I might try bosutinib or nilotinib, not sure.  Don't really like jumping around, would prefer to stay on one drug.

Hopefully the ones on bosulif will chime in, I'm interested in hearing how people are doing on it.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#4 Guest_billronm_*

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Posted 05 April 2013 - 01:38 PM

Hi Loreta,

  I'm going to the onc at 4:00 today. I'm terrified of trying a new tki. I know there is no way I can talk him into putting me on Sprycel after that pe I just had. I'll let you know how I make out.  I don't want Tasigma!     Billie



#5 Melanie

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Posted 11 April 2013 - 02:26 PM

Sorry so late in responding...haven't checked here for a while.  I'm on Bosutinib after trying all the other TKI. It's suppose to be less myeloid suppressive than the other TKI, which is what I need. Been taking it since Nov 2012 at different doses to control cytopenias and have only had one break for 10 days. The only serious side effect has been the diarrhea.  Can be managed with Imodium, but I haven't resorted to that yet.  It does abate some, but have found if I eat raw fresh veggies, it gets worst. Makes sense. Cooked veggies seem to be okay.  Interesting thing is I just increased my dosage last week and it's almost stopped completely, so maybe it's just a matter of getting adjusted.

I will say that this drug has been the best for me and with the least side effects.  Besides the diarrhea, there's only been the occasional mouth sore and chronic dry skin...but I live in AZ, so I have lizard skin anyway

Hope this helps and things are better for you now. Would still love to hear from more people that are on this drug.

Melanie


Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#6 Guest_billronm_*

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Posted 11 April 2013 - 07:39 PM

Hi Loreta,

  I was just checking in with you to see how you are feeling. Are you adjusting to the Bosutinib?  I hope so, it's miserable changing drugs and not knowing what to expect, especially in the long run.

  Take Care Billie



#7 stephiericks

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Posted 15 April 2013 - 12:06 PM

My husband is on his 3rd week of taking Bosutinib and has been having what we call "DGS" or dodgy gut syndrome. Diarrhea and cramps stomach - some days he's fine and others are uncomfortable. Takes Immodium and we're trying to determine if any food triggers it - possibly coffee and acidic foods? Will post if we learn any tips - thanks!



#8 momruns

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Posted 15 April 2013 - 06:23 PM

Greetings,

     My life on Bosutinib was only 10 days.  I handled the 6 days of diarrhea but on day 10 I had a complete body rash, every inch except my hands, feet and face.   Thank the Lord it did not itch.  I has been 8 days now and the rash is finally gone.  The doctor will talk with me later to see my next step.  Oh, I stopped the drug the day of the rash.

Thanks for all your input.

Loreta






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